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David Tuller: Trial By Error: Some Thoughts About NICE

Discussion in 'General ME/CFS News' started by Kalliope, Nov 19, 2018.

  1. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Some thoughts about NICE

    In fact, a robust debate about ME/CFS treatments rooted in scientific principles would be welcome, since such a debate has been largely absent in the UK. But it would require the NICE committee to include, in addition to a group of apparent GET/CBT proponents, a comparable cohort of biomedical professionals with some knowledge of clinical trials—that is, experts capable of rebutting claims of treatment effectiveness that exceed the evidence. The current list of committee members seems slim on that front. NICE should address this apparent discrepancy if it has any hope or expectation that the new guidance might prove credible and acceptable to a broad audience of clinicians, patients, care-givers, and others.
     
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  2. Barry

    Barry Senior Member (Voting Rights)

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  3. Esther12

    Esther12 Senior Member (Voting Rights)

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    I'm not sure what I think about the NICE process, I think I'm feeling more negative about it than Tuller tbh, but I think that blog does a really good job of summarising lot of the issues surrounding the NICE review to people, and therefore works as something that could help introduce people to the whole ME/CFS/CBT/GET controversy.

    "In fact, these GET/CBT proponents have a formidable job. They need to convince the rest of the NICE committee that open-label studies with subjective outcomes can provide reliable data—even though these studies cannot do that."

    I fear that standards are so low in UK medicine that this is a far from formidable job. When they're stacking he committee it could be a cake-walk.
     
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  4. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Very odd comment from EG......what's that all about?
     
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  5. large donner

    large donner Senior Member (Voting Rights)

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    EG.
     
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  6. Trish

    Trish Moderator Staff Member

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    Thank you for this @dave30th. Will you be sending it to NICE?
     
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  7. Barry

    Barry Senior Member (Voting Rights)

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    Ellen Goudsmit
     
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  8. Barry

    Barry Senior Member (Voting Rights)

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    What indeed.
     
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  9. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    I have pitched in and asked EG some questions!
     
  10. large donner

    large donner Senior Member (Voting Rights)

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    Notice I didn't use a question mark.

    Q: Very odd comment from EG......what's that all about?

    A: EG.
     
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  11. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Well done @Suffolkres. You raised some excellent points in answer to a very vague criticism.
     
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  12. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

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    Hardly a coherent statement from someone with her education.

    At best, she's an agent provocateur - either by choice or disorder - and her comment of unpacking David's approach is meant to distract from the real issues of NICE.
     
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  13. John Mac

    John Mac Senior Member (Voting Rights)

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    Careful! Ellen doesn't like being asked questions, she regards them as harassment just like certain other psychiatrists.
     
  14. strategist

    strategist Senior Member (Voting Rights)

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    Is Ellen sour about CBT/GET being dismissed entirely?
     
  15. andypants

    andypants Senior Member (Voting Rights)

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    From her twitter account I gather she doesn't think anyone who isn't trained in a specific field themselves can criticize it. So, not trained in CBT, not allowed to voice criticism.
     
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  16. wdb

    wdb Senior Member (Voting Rights)

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    Well I can't figure it out

     
  17. Andy

    Andy Committee Member & Outreach

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    Given that Ellen wasn't able to win the war using her tactics, why would we want David to repeat the same mistake? Why would we want to repeat it?

    Same goes for Erik Johnson who has been trying to give David a hard time on Facebook. They, along with a number of other "advocates", can't seem to accept that others are making progress via different methods to their own, and therefore they seem to think that they should be working to undermine those more successful.
     
  18. chrisb

    chrisb Senior Member (Voting Rights)

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    Does to "gove up" mean to commit some unspecified act of treachery?
     
  19. Lucibee

    Lucibee Senior Member (Voting Rights)

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    Well if she does insist on blocking the "new kids", we won't ever be able to listen!
     
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  20. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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    I'm not trained in military strategy, but I can confidently say that walking slowly towards an enemy while singing 'here we are, come and get us' without any cover and weapons, is not a good military strategy.

    Is she trained in David's speciality? ;)
     
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